Cashews

I had a few minutes to wander through the store, restocking the pantry as the school year starts.

I lingered near the snacks, contemplating what I should buy for those after-school snacks that seem to be consumed at an alarmingly fast rate.

Cashews?
Who likes cashews? I thought to myself.
Someone likes those. I should buy some.
(I have a lot of kids. Keeping track of their eating habits is hard!)

Wait....I think it is Sammy.

I didn't buy them.
Maybe I should have.

We've got a busy household.
And yet his presence is always there.

P.S. When I got home, I asked Yael if she likes cashews. "Yes, just like Sammy does," she said. I guess I should have bought them anyway.

Honesty

A year ago today I had a conversation that still makes me a little sick to think about.

It was the day before Day +8, which was also Erev Rosh HaShanah.
I had a plan, I knew that we wanted to have an opportunity to bring all the kids together, celebrate the holiday in a small way, and give Sam his new Hebrew name.

I had a plan, but I wasn't sure it was the right one.

Sam was 8 days post-transplant. His immune system was incredibly compromised.
Solly had just begun a new preschool. Germs....everywhere. (no matter how much hand sanitizer we used!)

I remember that I didn't even know how to ask the questions.
But I remember pulling Dr. M into the anteroom of Sam's room. A resident tagged along.

I posed the question: Tomorrow is Rosh HaShanah, I said, and it's Day 8. I really want to know if I can bring Solly over here. Sam hasn't seen him in over a week, and I just think it is important to have them all together. But if you think this is a bad idea, I will get over it.

Dr. M cleared his throat, and I could tell he was going to say something that I knew already. "He has a bad leukemia," he said. "That's the biggest threat to his life."

I always appreciated his honesty with me. He knew that I knew what was going on here, perhaps not to the great extent of his experience, but in my own experience, in my sense of what was going on out in the hallways of the HOT unit....I knew. I knew other children with the same story...AML...relapse...BMT...and then the terrible ending that we faced. I knew their names, their stories, their heartbreak. And Dr. M knew that I knew. So he was honest with me and I needed that honesty. I needed one space where I didn't have to sugarcoat or pretend for anyone. We were having this conversation in the anteroom because the very last person who should hear this honesty was Sammy. 

I remember taking a very big deep breath.

"Are you saying that I may never have all of my children together again on a Rosh HaShanah? That this could be our last one together?" The words came out all in a rush, almost defiantly.

I couldn't even believe that those words came out of my mouth. But I was terribly afraid, I was sick with fear. I knew the odds, I knew the statistics. I didn't want to talk about it -- not with my family or my friends, there was no one else with whom I could say this terrible sentence. I think my bluntness startled the resident. I think it may have startled Dr. M too. I've never asked him.

"Yes," he said. "That's what I'm saying."

Fine. Decision made. Solly will come. We all will be there. Together.

Rosh haShanah, the new year. Not celebrated with toasts and late night kisses, but with prayer and supplication. I couldn't read the words...I couldn't even imagine the words. So instead I dipped apples into honey and kissed my sweet children.

A year ago today I had that conversation, and I still get a little sick to my stomach when I think about that moment.

Every time someone sent Sam a note that said "you can beat this!" or "you're so strong!" I would feel a little clench in my belly, a little twist in my heart.

Because I didn't tell anyone, but I wasn't so sure it was all going to work out.

So I brought Solly on Erev Rosh HaShanah.
I imagined that every day was his last.
Just in case.
Today, I'm glad I did that.

First Rosh HaShanah - 2006

The Famous Lice Rosh HaShanah - 2008

Rosh HaShanah 2010

Rosh HaShanah 2011

Solly makes almost this exact face now.

All together, Rosh HaShanah 2013...forever the Sommer Four.

Childhood Cancer Action Month

If you're reading this blog, you're already "aware" of childhood cancer.

You're aware of the way that it can tear families to bits. You're aware of the crazy drugs and the crazier side effects. You're aware of the roller coaster that cancer treatment is for any family. You're aware of the horrible horrible moment when the doctors tell you that there is no more that they can do for your child.

You're also aware of the way that communities can come together. You're aware of the way that love and hope and blessing can shine through the darkness. You're aware of the pain that we've felt and you're aware that even just your virtual presence can mean so much to a family like ours.

You're probably also aware of some of the statistics:

1 in 5 children diagnosed with childhood cancers will die
46 children are diagnosed with cancer every day
7 children die every day of childhood cancer
Only 4% of all federal cancer research funding goes specifically to childhood cancers.
Every 3 minutes worldwide, a child is diagnosed with cancer.

Awareness is important.
Awareness leads to funding. Funding leads to better treatments, better diagnostics, better drugs, and eventually, better statistics. Cures, even.

So why is this post titled "childhood cancer ACTION month"?

I am hoping that YOU, my dear readers, will take your awareness and move it into ACTION this September.

Here are five suggestions of ways that you can TAKE ACTION this month:

1. Go Gold -- change your Facebook or Twitter profile picture, wear gold nail polish, put a gold sticker on your car....do something GOLD. When someone asks you why you've "gone gold," tell them.

Feel free to borrow this graphic as your profile picture or make your own

2. Commit yourself to sharing your new knowledge about childhood cancer with at least one new person this month, one person that you haven't told, one person who doesn't know Sammy's story. Or any child's story. To read more childhood cancer stories, follow Mary Tyler Mom at her blog, where all month long she will be sharing these heartbreaking stories.

3. Advocate on a political level for childhood cancer research funding. Start here at the St Baldricks Foundation. 

4. Organize an event at your workplace (blue jeans Friday?), your school (pajama day?), your neighborhood (lemonade stand?), your synagogue or church (bake sale?)...and commit to raising money AND awareness.

5. Make a donation to the St Baldricks Foundation, an organization committed to funding pediatric cancer research.

I miss my child so desperately.
Each day I find another thing that I will never learn about him.
Would he have been taller than me?
When would his voice have changed?
What would that deeper voice sound like?
Would he still love turtles? What would his new interests be?

I miss him so much, and I can't ever wish this on anyone else.
We can't bring him back, no matter how much we wish that were true. (Or how many times Solly asks.)
But hopefully, hopefully, hopefully....we can be a part of a future for other families, families that won't have to hear the horrible words that we heard.

Your child has cancer.
There's nothing more that we can do.

September...it's not enough, but it's a start.

Marking

This week marks Sammy's second birthday, his bone-marrow-birthday.

He was really proud of the idea of having two special birthdays.

I had imagined a big celebration for this week, heading into his first bone-marrow-birthday. A big bash. A pool party? A carnival? A bone marrow drive? A fundraiser? Sam and I had even discussed the options, the ideas. He was beyond excited for two birthday parties!

Instead of a bone marrow birthday celebration (and don't worry, someday we might actually have that fundraiser carnival on his birthday), we had a different experience.

We dedicated Sammy's gravestone.*

It was a small, family affair.
There were many many tears.
And a few giggles, mostly related to the questions that Solly asked ("Are we going to dig Sammy up, mommy?") or the funny stories that we all told about him (Yael loves to laugh about their card games together).
Did I mention that we cried?

We left pretty rocks that we rescued from the beach and painted. Our sweet young friends-like-family painted turtles.

Do you like the turtle?

Of course, there were googly eyes.

This little circle opens up to reveal a beautiful photo of our Sammy. Solly loved opening and closing it.

It's all very real. It never fails to be real.
But that headstone, so very real.
So very final.

It's not at all how I imagined spending this week. And yet, it was the right thing to do. It was right to take the kids to the cemetery, it was the right time to make this mark on the world for Sam.

That doesn't make it any easier.
Just....missing him.

Today is 256 days that he's been gone, and exactly 365 days since bone marrow transplant. 
Where we were:
One year ago today: a bone marrow birthday
Two years ago today: a short hospital stay

*Jewish tradition has a lot of customs surrounding death and mourning. The custom of setting up a stone or a monument, dates back to the Torah, in which Jacob erected a monument to his beloved Rachel after her death. Obviously, the marker helps to identify the grave and to honor the dead.

Artful

You might not believe this about me, but I'm actually not that sentimental about many physical objects.
In particular, I don't have bags and bags of my kids' artwork or schoolwork.
I look at it, and I ooh and aah. I will often take pictures of the artwork to save "for posterity."
I learned early on that with a whole bunch of kids and a small house....I could easily be overrun!

So I strung up some clothesline in my kitchen and basement stairwell. A few clothespins, and voila, an art gallery. I try to cull it down, especially at the beginning of a new school year, to make room for new art. I record the pieces with pictures, and ask the kids if they want to keep any of them. They usually say no.

Over the years, I can't imagine how many of Sam's pieces of artwork I have thrown out.
Would I have done so if I had known? Would I have saved every scrap?

There's quite a bit of Sammy's artwork still hanging up. Kindergarten work, and some of his later art from the hospital.

You often read about famous writers or composers who leave behind an unfinished novel that's published as a short story, or a symphony that's found in a drawer and presented in a memorial concert. We're not going to find that. He was eight years old. Very little happened that we didn't know about (no secret novels or diaries for this little guy). After he died, I flipped through seemingly-blank notebooks, hoping that maybe I'd find one more pencil doodle on a random page at the back. But for the most part, what I have is what I have.

I took down nearly all of the artwork from the other kids from the past year. But I left Sam's. I'm probably going to eventually frame some of it, to protect and keep it safe.

I'm so immensely sad that I won't ever have any more of it.

I won't ever see the artist he could have become.
I won't ever read the stories he could have written.
I won't ever hear the songs he would have sung.

So much beautiful art that will never be made.
The art of living....

Art from September, 2012 -- a "classic" Sam Sommer

during BMT, body art! (oh, and note the hair art too)

I love these prints that he made. I have them all...

It's been 250 days since his last breath.
A year ago today Sam was prepping for BMT
Two years ago today, Sam was striking a pose. (Also this week, two years ago, he started first grade.)

Class Lists

The class lists came out.

Preschool orientation happened.

Visiting the rooms that Sam inhabited. Seeing the teachers.

His classmates, grown taller and sturdier over the summer. Their sweet tanned faces filled with the anticipation and expectation of a new year.

And Sam's not there.

We're all moving forward into the newness of the new.

And he's frozen forever...with us but not with us. There but not there.

New teachers who didn't know him.
New people to meet who never knew that my children once had one more living brother.
New faces to explore and see the recognition in their eyes when they realize who we are.

Third grade.
He was supposed to be starting third grade this year.

Time rolls on, without him.
Time rolls on, and we roll along with it, acknowledging milestones, moving forward, continuing to live our lives.

This week began a huge series of historical milestones in Sam's life. A year ago, we had an epic trip to Disney and shortly afterwards began the BMT process. Each day, I was completely and totally aware of the date and the number of that day. I watched as my other kids started school. The high holy days were just around the corner. Each moment was a progression, an event, an experience. Each moment was documented and recorded, because that's how we do things. His BMT "birthday" is coming up, and I really had imagined a huge blow-out pool-party-carnival-extravaganza to celebrate.

But that's not what we have.
And so I try to hold back the tears, and sometimes they fall anyway.

First day of First Grade (and fifth grade for David)

First grade...

Kindergarten (we might have a family tradition of checking out your locker size)

Kindergarten and fourth grades

First day of Kindergarten

Incomplete

So many kids came home this week from their time at summer camps all over the country.

"My house is full again," someone told me.
"We're all back together again," another one said.
"Family complete," said a third.

David and Yael returned to the nest after their time at camp.
I was so glad to see them.

And yet it felt so incomplete. My nest will never feel complete again. In some ways, having them out of the house in various waves made it easier to feel the conspicuous absence of Sam. Always there.

We settled down to our table set for five.

Incomplete.

Thinking about starting school and filling out forms -- one whole set left undone.

Incomplete.

There was an article published this week about a blessing for "completing" one's family.

Perhaps I'm just superstitious, but I never wanted to close the door on that. Sure, I knew that I was probably done having babies. But I never felt that the word "complete" was the right one for how my family felt. It was good, it was wonderful, but I couldn't close the door on welcoming someone, anyone, into our family. In a sense, we were always incomplete, always ready to open our doors to someone else...biological or not.

But this article gave me pause. Because without realizing it, I had considered us a "complete unit."
And now we're not.

We're incomplete.
Forever.

Returning from camp 2012 -- I took David to shower and put on new clothes before he could come to the hospital to see Sam.

Returning from camp 2013 - right to RonMac (and also a shower, of course!)

And this year...

Where we were a year ago: welcoming David "home" from camp to RonMac
Where we were 2 years ago: having "fun" in the hospital